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Information For…

One of the major challenges facing scientists who work on rare disorders, such as hemophilia, is the lack of uniform health data. To address this issue and to advance health research, CDC created a national public health surveillance project called the Universal Data Collection (UDC) system. UDC was carried out in collaboration with federally funded hemophilia treatment centers (HTCs) in the United States and its territories.

During the system’s operation from 1998-2011, about 27,000 people with bleeding disorders have contributed their health data by participating in the UDC program. More than 80% of all people with hemophilia who receive cared at HTCs during that period participated in the study. Community Counts aims to continue and expand on the work of the Universal Data Collection system.

UDC Data Reports

UDC data and reports are available to HTC staff. Staff at each HTC can download electronic files containing UDC data collected from participants at their HTC. In addition, national and regional reports are available to the public on CDC’s website.

Lessons Learned and Future Directions

Important Findings

Several articles about studies that used UDC data have been published. A few of the findings so far are:

Youth with hemophilia are just as likely as youth among the general population to be overweight.1

Youth with hemophilia who are overweight are more likely to have decreased joint mobility than those who are not overweight.1

Joint infections are a rare complication of hemophilia, but they are more common among people with hemophilia than among those without the condition. Infections happen mainly in problem joints that bleed frequently or have undergone joint surgery.2

No new infections of hepatitis A, hepatitis B, hepatitis C, or HIV have been linked to blood products used to treat bleeding disorders.3

Among deaths of people with bleeding disorders reported to CDC during the period 1997–2007, the most common causes were related to HIV infection (19%) and liver disease (22%) probably related to hepatitis C infection. Both of these infections could be transmitted by clotting factor products before 1986. Hemophilia-related (bleeding) causes of death were less common (12%).4

The most common sites of bleeding among babies with hemophilia are the circumcision site and the head. Bleeding inside the head (intracranial hemorrhage) is a very serious complication and can result in long-term effects such as seizures and learning disabilities.5

The rate of new inhibitors (antibodies to clotting factor products) among previously treated patients with hemophilia is very low. However, more study is needed to determine why they occur because an 6

Overweight and obesity accelerates joint mobility loss in weight-bearing joints, particularly among those with severe hemophilia.7

Intracranial hemorrhage (ICH) occurs when there is bleeding inside the skull. The most significant risk factors for an ICH are (1) the presence of an inhibitor (2) prior ICH (3) severe hemophilia and (4) reported head trauma. Consistent use of preventive medication can reduce the risk for ICH.8

Youth with severe hemophilia who obtain care annually within the United States HTC network are often insured and use preventive home treatments.9

Hispanic males are more likely to develop inhibitors than non-Hispanic males.10

Patients exposed to treatments using human blood may be exposed to certain viruses.11

Kulkarni R, Soucie JM, Lusher J, et al. Sites of initial bleeding episodes, mode of delivery and age of diagnosis in babies with haemophilia diagnosed before the age of 2 years: a report from the Centers for Disease Control and Prevention’s (CDC) Universal Data Collection (UDC) project. Haemophilia e-pub July 22, 2009.